Sophia + Michelle Sie Whitten – Changing Hearts + Minds
October is Down Syndrome Awareness Month. Michelle Sie Whitten, Co-Founder and President of the Global Down Syndrome Foundation and mother to Sophia, a child with Down syndrome, was disheartened by the lack of funding for the genetic condition and worked tirelessly to lead her organization to fund some of the most groundbreaking discoveries in Down syndrome research.
The Global Down Syndrome Foundation is a public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical care, Education and Advocacy. GLOBAL has become the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.
For the past 5 years, I’ve been fortunate enough to talk to Michelle about her ongoing efforts which have impacted the lives of so many people. I’ve especially loved witnessing how many hearts and minds have been forever changed.
In honor of my niece Sofía, it’s with great excitement that I dedicate this special digital cover story to Michelle and her beautiful daughter Sophia.
Why did you start your organization?
I started the Global Down Syndrome Foundation primarily because my first child, Sophia, was born with Down syndrome. My husband and I got the diagnosis when I was 19 weeks pregnant and despite a lot of medical professionals putting pressure on us to terminate, we decided to move forward with the pregnancy and never looked back. While I was pregnant we started to look into how to make her life safe and happy and discovered that there was almost nothing in terms of appropriate medical care or research supporting medical care. I’m sort of a type A personality so I flew to Bethesda shortly after Sophia was born and met with the then Director of the National Institutes of Health (NIH). He pulled some numbers for us and was surprised himself to discover that Down syndrome was the least funded genetic condition at the NIH. He told me that if I did one thing it should be to create an institute for research and care for Down syndrome – Autism had several, fragile x and others but Down syndrome did not. Fast forward to today and thanks to that director, our over 200 scientists, 20 clinicians, congressional and NIH champions, and thousands of individuals with Down syndrome and our families we have the Global Down Syndrome Foundation and our Affiliates – the Crnic Institute for Down Syndrome, the CU Alzheimer’s and Cognition Center, the Sie Center for Down Syndrome at Children’s Hospital, and the GLOBAL Adult Clinic at Denver Health.
What has been your favorite moment in Sophia’s life so far?
It’s impossible to narrow it down to one moment! She has brought me and my family such great joy at every milestone and at each funny and remarkable moment along the way. On an almost daily basis Sophia will find my phone for me, remind her brother Patrick that his lunch is still in the fridge on the way out the door to school, and writes on her dad’s white board when we’ve run out of something from the pantry. Also, watching her graduate from pre-school, middle school, high school and starting her freshman year at Regis University are definitely up there but also watching her help her brother and comforting others who are down or need a friend is awe-inspiring.
What is the biggest misconception people still have about people with Down Syndrome?
I think one of the biggest misconceptions is that people with Down syndrome are limited and stuck where they are. In fact, people with Down syndrome are great learners and cannot only learn at school but can learn skills that can lead to a job, and learn skills that lead to independence or semi-independence. They can have hobbies, participate in sports, clubs, get married and have a full life. What limits them is other people or a society that devalues them as non-people. In our country the technical term for people with Down syndrome was “imbecile” or “idiot” then it progressed to “mentally retarded” and now we refer to them as “people with intellectual and developmental disabilities.” At GLOBAL we use the term “differently-abled” but hey why don’t we just call my daughter Sophia by her name?
What nugget of wisdom can you share with parents raising children with DS or any other condition?
I’d say early intervention (getting physical therapy, speech therapy, occupational therapy and appropriate medical care) make such a big difference for the trajectory of our children. Most states have considerable funding to help with early intervention but there are entire countries that don’t have such services so it is tough. I’d also say that it is never too late for an adult with Down syndrome (or any adult for that matter) to get therapies and improve their lives or to learn new things no matter how small or incremental they may seem. Most people get satisfaction from being lifelong learners and it could make a difference in their lives!
What is the end goal with the work you do through your organization?
The end goal looks like this: (1) We have elongated life of people with Down syndrome from 60 (or if you’re African American it can be as low as 36) to well into the 70s and on par with the average American’s lifespan, (2) We have significantly improved health outcomes especially between the ages of 40-60 when there are a lot of autoimmune diseases that may start and the potential of early onset of Alzheimer’s, and 3) Because of #1 and #2 people with Down syndrome are able to live longer, healthier, safer, productive and happier lives.
What is Sophia’s biggest dream for herself?
Ah. Where do I start? She wants to be a doctor to heal everyone. To be a singer-songwriter on par with Taylor Swift. To be the first woman with Down syndrome to play in the Women’s Soccer World Cup. To be cast in a TV show called Bunk’d as Miranda May’s sister and best friend to Peyton List in a season that has yet to be filmed (she’s scripted it out). To be best friends with Olivia Rodrigo, Miranda May, Amanda Seyfried, Lily James, and Meryl Streep (essentially everyone in Mamma Mia!). And of course she is already telling everyone to save the date for Saturday, July 1, 2028 when she will marry her boyfriend Sam in Malibu (thanks to Miley Cyrus).
Please share how readers can help and support your efforts.
There are so many ways your readers can help! Attend or support our Be Beautiful Be Yourself Fashion Show in Denver on Saturday, November 12, 2022! Or our AcceptAbility Gala every May in Washington DC. Join our advocacy team in writing and/or meeting your elected officials to increase funding for Down syndrome research and medical care. Volunteer! Choose a sport and create a fundraising page in support of GLOBAL. Send us photos of yourself or loved-ones with Down syndrome for our Down Syndrome WorldTM magazine. Become a member for just $20 a year.
To learn more, visit www.GlobalDownSyndrome.org!